Our Stories, Our Futures: Advocacy as a Lifelong Journey

Tuesday, March 06, 2018

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

Yet there’s something about this event that continues to inspire me year after year—the people who participate. I am fortunate to have built some close friendships with fellow advocates over the years, and seeing them is always such a joy. But equally rewarding is seeing all the new people who come to this event each year—whether they are fellow CHD patients (of all ages!), parents, spouses, siblings, or medical professionals.

I got to meet several inspiring people this year, but two of them resonate in particular—a mother and son from Illinois who came to advocate together. As a fellow tetralogy of Fallot (TOF) patient, Luke and I quickly bonded; however, it was soon established that the nine-year-old is obviously the cooler of the two of us. (In the spirit of total transparency, however, that’s not a very high bar.) In our first meeting with Congressional staffers, Luke and his mom told his story; I jokingly added that I am the older version of Luke. It was a spur-of-the-moment comment, but I heard later that it resonated with others in the meeting. Luke’s mom also shared with me that she was happy we met because I was an inspiration for her as a heart mom and a role model for Luke. (Melanie, the feeling is mutual, and your feedback is truly humbling. Thank you!)

Each person who attends the Legislative Conference has a story. Each one is unique, powerful, and intensely personal. Whether it’s a “success” story or one that ended too soon, none is more or less important than any other. Collectively these stories create a larger narrative for the greater CHD community—a community that is growing in numbers thanks to significant medical advances but one that, unfortunately, remains underfunded, underrepresented, and under cared for. (It’s estimated that fewer than 10% of adults with CHD in the United States receive proper medical care.)

As the number one birth defect in the United States, we’re now at a point where there are more adults than children living with CHD. While this is obviously good news, it also creates what I believe to be a growing and critical public health concern. In addition to lacking the proper surveillance data and research funding (the primary “asks” during our Hill visits), the CHD community faces a shortage of qualified cardiologists and established medical centers to care for the growing and aging CHD population. (Don’t get me wrong, progress is being made on all fronts. But we have a lot of catching up to do.)

While the pace of progress in D.C. can often be painfully slow, we were fortunate to witness the passage of the Congenital Heart Futures Reauthorization Act (CHFRA) in the House (H.R. 1222) on the eve of our Hill visits. It was a huge win and a critically important step on what is a very long journey. In a world that often looks for instant gratification, it is heartening to see the steadfast commitment of so many people who are committed to making progress—whatever the pace.

The saying goes that slow and steady wins the race, and I couldn’t be more hopeful that it’s true. But I also think we’re at a critical moment—one in which the entire CHD community needs to begin working even more closely together. We have accomplished many great things already, but I sincerely believe that a more unified approach will make our voices even stronger and increase the pace of our progress on all fronts. I firmly believe that we owe it not only to ourselves, but—more importantly—to Luke and to his peers to work more collaboratively toward achieving our shared vision of a better future for all who are living with CHD.

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Chicago native Ken Woodhouse was born in 1981 with tetralogy of Fallot and has two open heart surgeries to date—at 8 months and 32 years old. He is an avid cyclist, having completed a variety of long-distance bike rides across the USA and in Canada. He refuses to let his CHD hold him back, and he is admittedly a bit of an endurance event enthusiast. Ken also writes his own blog about living with CHD. Twitter: @KenofHearts

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